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Comment by flybayer | Hacker News Reader

Good question! She stopped eating gluten a couple years before learning investigating a Celiac test. The problem is Celiac tests only work if you are currently eating gluten.

Since even a tiny speck of gluten gives her insane pain, she'll probably never be able to get properly tested.

That said, several doctors think she does have Celiac.

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Right, one has to not only eat some gluten but eat it for up to 3 months to avoid a false negative. This is fairly new information to many doctors (neither of my MDs were aware of that, nor my GI specialist - I had to inform myself from the internet and do my own self conducted, self monitored gluten challenge to ensure the test they ordered was accurate).

Now I'm in the position of being very clearly sensitive to gluten, having a first degree family member with celiac, and a 2 positive blood tests. That is enough for most European doctors and some American doctors to firmly diagnose, but most American doctors insist on a biopsy that shows intestinal damage. They gave me a biopsy when I had been on an almost gluten free diet for months, and it didn't show anything. I'll probably never get tested because there is no way I want to go through great suffering and risk permanent damage by eating gluten for weeks or months just to prove it to health insurance.

Same here - I'm ridiculously sensitive to gluten.

I've not been diagnosed, and I doubt I will ever be. I was contaminated over Xmas, and the past two months have been hell on earth. I managed to drag myself into work but the joint+muscular pain, not to mention the brain fog made me regret that decision - every. single. day.

But you have to put food on the table and pay your rent. I would never consider eating gluten for a week let alone three months. I'd be extremely ill.

Exactly - this concept of the gluten challenge is accurate and makes sense clinically, but in practice, one has to continue working or going to school and it isn't reasonable to be in massive pain and mental disarray for 1-3 months for a medical test.

Hopefully celiac testing will advance in coming years.

Honestly including that information on your website seems unnecessary.

There's sort of a... thing in the gluten-sensitive community where people who have Diagnosed Celiac sometimes shit all over people who aren't diagnosed, and one of the first questions that comes up when you discuss gluten sensitivities with other people who are semi-knowledgeable is "oh are you diagnosed?" (as though it matters).

It doesn't really matter (unless you want to be able to deduct the cost of GF food on your taxes or try to get insurance to pay for them), but I could see why someone might just preemptively get that question out of the way first.

“Have you been tested to know eating beef is physically harmful to you?” is a question nobody would dream of asking a vegetarian/vegan. Veggie/vegan people exclude meat for reasons ranging from allergies, other health issues, political stance, an understanding (or misunderstanding) of how the food chain works, or just as a matter of personal choice. Does anyone subject a person’s choice to not eat meat to any kind of qualification?

But talk about omitting gluten from one’s diet, and suddenly one’s personal health information is fair game for any stranger to inquire about.

Just an observation from this wheat- and gluten-loving individual.

I agree with that and disagree from various viewpoints.

When I'm trying allergy elimination diets, I really, really care about whether something has the allergen in it, even though I've yet to be diagnosed or proved harm from it. I still treat it like I am avoiding it 100%, since you have to for the trial, and expect other people to.

On the other hand, when people without true severe gluten sensitivity claim they have celiac, it muddies the waters for those who do in terms of public perception.

On the other hand, it kind of doesn't matter if people see one of those people eat gluten and not react, though. I wouldn't react instantly so they'd never see me suffering either.

People running around with false claims of celiac disease is not something I’ve encountered. I know a lot of people who don the moniker “gluten free”.

What I mean is when people somehow determine they have some form of gluten sensitivity, ranging from mild bloating to celiac-like symptoms of NCGS, and call it ‘celiac’ without realizing how specific that is.

Well, I have to read on here, apropos of nothing, the BS that vegans/vegetarians are so because of reasons like "political stance" or "misunderstanding of how the food chain works", whatever either of those are supposed to mean. Ironically it was used as an example of people with some diet not being 'fair game' to random intrusion.

I responded to this earlier, but I wanted to add that having been a vegetarian, in my experience people routinely question it, and often the only reason they accept without taking some shade of umbrage is that you are doing it for your health.

Because you have all sorts of people that make a big deal about having celiac but then go eat French fries at a restaurant (most restaurants put breaded items in their fryers) and give the false impression that celiac is just a minor inconvenience. Or they claim that their "celiac" only applies to gmo food.

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